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My name is Pauline I'm 41. I had had stomach pains for a while and in 2009 my GP sent me for a routine blood test. It came back high. They then did a GTT and that was high.
GP said diet for 3 months & we'll take blood again to see if glucose goes down. I dieted and it didn't. GP says I am T2.
Was on one x Metformin tablet twice a day. Went on holiday to Florida this year came home and had a pain in my leg and my eyesight was blurred. Was admitted to hospital as my glucose was off the meter, I had ketones in my blood too.
Hospital started me on insulin. My HBaiC (or whatever it's called) was 97, it had been 6.2 in February.
So after 3 days in hospital I was sent home with Novomix and some needles and got on with things.
Saw GP in December as I kept hypoing on novomix so they changed me to Levemir once a day and upped the metformin to 2 x twice a day.
Since being on Levemir (I started at 12 units) I am now on 22 units every morning and my numbers are not coming down.
I have to see the Dr again on Friday and I'm going to ask for a rapid insulin as it seems as though I need this.
Dr thinks my pancreas stopped working, I think my original T2 diagnosis was wrong. What should I do, I want to know if I'm T1, T2 or T1.5. Not that it's a big deal, I know I have to stay on insulin, but just so its set in my mind.
This is all new to me still - the injecting etc as I only started on insulin in November.
If anyone has any help or information, I'd be very grateful.
Thanks in advance
You are absolutely correct, Pauline, that it sounds like you need a mealtime rapid insulin. Your Levemir keeps going up because it is trying to cover the mealtime carbs and it can't do so effectively. Do you know how to carb count? I highly encourage you to get the book Using Insulin by John Walsh to help you with all aspects of insulin use.
You are right, if you are Type 1, the Metformin is not an appropriate treatment. Though some people say it doesn't matter, I personally found it made everything fall into place when I found out I was Type 1, rather than the Type 2 I was originally diagnosed due almost solely to age (I was 58). I don't like the name "1.5" as that makes it sound like it is halfway between type 1 and type 2 which it is not. I prefer the words LADA (latent autoimmune diabetes in adults) which is what I am. But LADA is just a slow onset Type 1, and at this point (3 years into insulin and 4 1/2 total with D), how I got here makes little difference, I just think of myself as Type 1.
You need to ask your doctor to do antibody testing and c-peptide to determine your type and how much insulin you are still making.
Btw I assume when you said your A1C was "97" you meant 9.7, which is definitely high and you need to get it down. Advocating for yourself is the best way to do that, and you might have to fight an uphill battle to get tested for type as some docs are still back thinking at age 41 you are, of course, Type 2.
I am not sure most GPs are experienced enough in diabetes to treat you effectively.
If you are near a major diabetes center, consider trying to get in there...they will take a comprehensive look at your care and try to sort things out, as well as make sure you get enough training to let you manage the disease rather than the other way around . I think it sounds like you have the right attitude....it's just a matter of getting the right tools.
Alternatively, if you are not near a diabetes center, see if there is an endocrinologist nearby who has a practice specializing in diabetes and works with a CDE to help you get up to speed on basal/bolus therapy if that is what you need.
When I first went to my GP with blurry vision, thristiness, weight loss ,etc last March, he put me on Janumet (metformin + sitagliptin) when he saw a blood sugar of 500 and an a1c > 10. In retrospect this was ridiculous. It did nothing. I was in DKA. It was a friday and he wanted me to call an endo on Monday. By next Thursday I got to the Berrie Center in NYC and was on insulin...ultimately diagnosed as T1 at 50.
There are tests they can run that sometimes help sort out what type it is ...C-Peptide, islet cell antibody, GAD antibody, etc. None of the tests are perfect diagnostic indicators, but sometimes with enough data pointing the same way, you can get a good clue. Ultimately it is about doing what you have to to get your blood sugar under control.
OK...good to hear that there is a specialist you can access.
Things are going well, after a lot of learning. I started on multiple daily
injections (Lantus and Novolog) in March...initially just using the fast insulin for post-meal correction (I was in the honeymoon phase and my body was still producing some insulin). After about a month, I needed more insulin and was ready for better control, so I started carb counting and dosing before meals. Last november I switched to the Omnipod pump and that is going well. A1C down to 6.9 and soon below 6.5 I hope to eventually get as good as many of the people who post on here.
Hello Pauline in London, UK. I read your post carefully, but I need a little more info. Are you testing before and 2 hrs after a meal? I am assuming you are using Levemir to cover your basals and Novarapid (Novolog) to cover your meals. There is a test called c-peptide to find out if your pancreas is making any insulin. Request your doctor to have this test done. This test can determine if you are T1, T2, etc. You have a lot to learn about this disease. Folks in here can answer your questions better than the doctor sometimes, since we live the lifestyle. Not a great lifestyle, but we live with it. Metformin is used a lot for T2's, but some doctors use it along with insulin. My suggestion to you at this point is to keep a logbook and show it to the doctor. Fire away with questions. We're listening.
It is important to know what type you are, as this affects what treatment you should receive. Type 1s, for example, should really not take metformin, as it is too hard on the kidneys. Metformin is for insulin resistance. Now if you have insulin resistance (which the results of your GTT indicate I believe), then metformin might help reduce the amount of insulin you need to inject. It's really a risk assessment - does the drug provide more benefit than harm?
The tests used to differentiate between T1 and T2 (LADA is just a form of type 1 that develops later in life and comes on a bit more slowly) are c-peptide (to measure insulin production) and testing for antibodies (to see if you have those antibodies that attack the insulin-producing cells in the pancreas).
Yes, if your numbers are not coming down, it's likely you also need a fast-acting insulin for meals.
I don't know how things work over there, but you really should see an endocrinologist.
Actually, T1s can and should take metformin if they are having insulin resistance issues. People with impaired kidneys should not take metformin (that includes all you T2s).
I do agree, getting a proper diagnosis can be crucial to getting appropriate treatment. Some doctors can use antibody and c-peptide tests to try to make a diagnosis, but even then the tests are not conclusive. Only 85-90% of T1s are antibody positive. Often, it is simply an educated judgement call and for that, you really need an endo. The big thing to understand is that 90% of diabetics are T2, so the average GP will always assume you are T2. And sometimes it takes supernatural events to overcome the initial misdiagnosis.
Only time and further consultation will determine what type of diabetes you have. I will tell you that treating your diabetes involve proper diet, exercise and medications no matter what type. You should be following a diet, counting your carbs and I would argue restricting your carbs. And you need to be taking the right amount of insulin, you may just not be taking the right amount. I take almost twice the amount of Levemir you do.
With a rapid insulin, you can better manage your blood sugar rise from meals, but you still can't eat infinite carbs and you need to count the carbs you do eat to precisely dose your insulin. The penalty for overeating carbs and miscounting is a high or a low.
Have you had the GAD 65 antibody test and the C Peptide test done? Those are the two tests that will determine if you are LADA.
Hi Pauline: Be sure to get the full suite of antibody tests (GAD, ICA, IA-2) not just GAD, because many people with adult-onset Type 1 diabetes are only ICA positive. If you are antibody positive, you have Type 1 autoimmune diabetes. And get the c-peptide test, too, as that is very helpful but not a definitive test. You have gotten some good advice here, I hope you are doing okay! Let us know.